This article was provided by TheBody.com.

 

Comment by: Nick (Connecticut) Tue., May. 29, 2012 at 12:48 pm EDT
I hate HIV medication and i still take it, but it ruin my life because it cost so much the medication every month and the state will not let me work because i feel 99% very good and what about my cost of living to pay the bills, state don't care and my social security said i can work and make $1,010 a month but the state say no i can only make $2,500 year on a partime and i am so angry and that call unfair because of the big Pharma cost and i pray to god that the greedy riches will be rotton to hell because doctor make me feel better and i follow thier rule to take medication on time everyday, and i hope the CURE will be on a way in the next couples years and i know they already have the CURE but they kept quiet and closed the case because of the "big pharma" can go out of business from the HIV drugs and i am so angry they are playing my body for DRUGS MONEY that all they do and i feel sorry for 33 millions had suffer HIV/AIDS you all will be taken care by GOD and GOD love you all AMEN!

Comment by: mk (new mexico) Tue., May. 29, 2012 at 11:42 am EDT
Have been on my meds for five years and have been doing well, yes we all forget at times we are all nt perfect, but thats where the we are teated in this world. Our body may change, and feel fat. The challanges keeping your head up and moving on in life. We all came into this world perfect and we are not all going out PERFECT. We are going to die w something before we leave this world. That's were w are tested stay strong. I have read all of your sataement thank you I don't feel sooo alone. Let's keep up the fight.

Comment by: Whatdoesntkillyou (Houston, Texas) Mon., May. 28, 2012 at 2:30 am EDT
I am from texas and HIV positive for four years. Started medication back in 2010. No problem getting the medication for free. I never been sick. I exercise regularly, weight lifting and cardio. I feel great than ever. I have to take vitamin D and calcium to counteract the side effect on my bone. I like to hear the song "...what does't kill you makes you stronger" when I exercise.
And I never missed my pills, I do not want to go through drug resistance problem. Always after dinner and breakfast. One more thing, I even completed my masters degree and looking for a job. So the bottom line, we have no choice except taking the pills everyday. Accept it and make it your daily routine. Live with hope!

Comment by: Chris (New Orleans, LA) Mon., May. 14, 2012 at 5:53 pm EDT
My issue is copays. I have to pay more now than ever before because my employer is asking all of us to take on more financial responsibility for our medical and pharmacy benefits. I'm grateful for insurance but it's becoming more expensive and taking these meds is costly. I get samples of Kaletra and use copay cards for the other drug. But recently the clinic I go to will not allow samples anymore. I can't understand why. But it seems to me that if clinics really wanted to help people, they should allow free resources like the samples. All they are doing is hurting my ability to afford the meds. And I don't want to go to a public clinic around here. I keep hearing about waiting lists, no samples there either and simply not a place I want to go for my care. Allow the samples. They help me and could help others too. Wish I had known about ithem sooner. I would've chosen samples over less pills to save money.

Comment by: John (San Diego, California, USA) Fri., Apr. 13, 2012 at 3:48 pm EDT
A little cheese with that whine? I forget to take my meds because I forget. I am distracted at bed time or breakfast and just get to sleep or out the door before I remember to take them. Because they are prepackaged by my pharmacy, I can see if I missed a.m. or p.m. doses.
I think there is a myth of adherence that we have to take each dose on time. The dosing is a guess-timate for what may work. I don't think missing two or three doses a week will probably make a difference. Why stress over it?
But reading some of the comments above, I doubt if anyone who died of AIDS would really be so prissy about the paperwork, the body changes or the side effects if given those inconveniences rather than a painful, awful death from this disease.
Yes, we have a lot of work to do. Many of the programs we rely on are being cut. In many parts of the U.S. people can't even get AIDS therapy. Kids still think they are immune to everything. Let's work on those.

Comment by: George (The Netherlands) Mon., Apr. 9, 2012 at 8:03 am EDT
I have been HIV+ going on 22 years, and I was never on medications until after 4 years and that was briefly when I got AZT whilst serving in the Jamaica Defence Force (JDF)I moved to Amsterdam early 1999,but it took me another 2 years to ask for help, and I got it right away from the (AMC)I tried taking my meds on time for the first year or so, but after a while I just could not keep up with the strict regime, eventually I started taking them at various hours, I had a nervous breakdown in 2002 where I did not take them for days,shortly after I moved to another part of the country, but I just did not keep up with the strict timing, I moved again to my present location Rotterdam, where the worst thing happend in 2004, I developed Stephen Johnson's Syndrome from a brand new cocktail I started 2 weeks earlier, after spending a month in a coma and returning home not recognisable to myself or anyone else, I went back to the AMS in Amsterdam and was told that 1 tablet from the new cocktail was the Culprit, I started on new meds shortly after and this time no major problems, but often my time has changed, it varies from 12 hours to an hour and it seems that it does not make a difference, when I travel to other countries, sometimes I forget to adjust to their the time zones,bottom line I am very lucky gay man to be alive @ 42 years old and HIV+ 22 years next month.

Comment by: Dan I (Arlington, VA) Tue., Apr. 3, 2012 at 11:13 am EDT
I have been HIV + for 10 years and just recently my partner lost his job and our health insurance. I am scared to death that I will not be able to afford to continue taking my medication(Atripla) I hear it is over 1400.00 a month! Nowadays most of the health plans want you to order a three month supply via e-mail express service. $3200 every three months for meds is definately something that I can not afford. I do not even make that much! I have enrolled in my companies health plan but have no idea what percentage of coverage the give for my meds. Really scared that I will develop complications if I have to stop taking my meds. I can not even go to the doctor to get his advice because I still have not recieved my Intro-Insurance packet yet. All of this is causing me a great deal of stress and fatigue. I have been completely off my meds for about 3 weeks now, and I can already feel the strain it is having on my digestive system. Wake up in the middle of the night vomitting, feel listless most of the time, and major migrane-headaches. Now i have been missing work and fear that I will be fired for taking so much time off. Which of course will result in NO INSURANCE! At my wits end, do not know what to do. Anyone have any advice?

Comment by: Lisette (Virginia) Tue., Mar. 27, 2012 at 9:14 am EDT
Sorry for everyone dreading your meds but it will be forever for you. With so many people with AIDS and cancer there is really no incentive to find a cure for either. The pharmaceutical companies are making GA-BILLIONS. You really think they care about you? Think again.

Comment by: Sunny (South Florida) Sun., Mar. 25, 2012 at 9:46 am EDT
Hello, I've read some posts and I sympathize with each and every one of u...it is very vital for you take your meds on a regular basis. There are different regimens and although one may be great for you, it may not be great for the next person. For the ones who have problems receiving their medications, there is a great pharmacy here in Florida that will ship anywhere in the country. They also are bry familiar with different assistance programs to help you with getting your medications. Please feel free to call them: Commcare Pharmacy, 561-615-4508. They are great at what they do, specializing in HIV, hepatitis, oncology and other disease states. They also have two other locations in south florida as well.

Comment by: Jim (Florida) Fri., Mar. 23, 2012 at 4:18 pm EDT
How about despair? Just flat out feeling so beaten up by life and disappointed in people that fighting the fight seems futile and endlessly disappointing. Blah, blah, blah. Yes depression. Tell me something I don't know. Sometimes being proactive about taking care of myself evokes feelings of hostility and resentment because of the guilt that I feel for not feeling grateful for having the opportunity of managing my HIV. Are my thoughts unique or would self destructive behavior be something that I have in common with others?

Comment by: gary s. (england) Sun., Feb. 26, 2012 at 4:08 pm EST
found out i was hiv just befor xmas 2011 my cd4 acount was146 i was really ill when on hiv med feb i take two pills at nine lost 2 stone in weight putting bit back on but dont wanna be too fat like i was i dont mind taking them fine they ok was hard a first to get my head round that i had hiv but now am sound never not took my pill i take some out with me too and take them at nine in the evening they there to help us so come guys take them we all wanna live full life

Comment by: John (Houston, TX) Sat., Feb. 25, 2012 at 2:34 am EST
Five years ago when my doctor told me I was HIV positive, I wanted to do what he suggested, I wanted to believe him and take the medications so I could live as long as possible. Today though I'm healthy, strong and I've been tested HIV negative. If I had started the ARVs I likely would have died already. Thank God I read more about how HIV testing is unreliable and how the AIDS drugs actually cause the very condition(s) they're supposed to prevent. I can only pray for all those poor souls who are taking their HIV meds that someday too they will walk the same path I did.

Comment by: John (Santa Fe, NM) Wed., Feb. 22, 2012 at 1:53 am EST
I am a 50 year old hispanic man. A gay man of my age and from my generation is so fortunate to be alive because, I should have died from HIV/AIDS. I didn't. I take Atripla and keep to my regimen without fail. It's become second nature. I clearly remember the days when being diagnosed with HIV/AIDS was a near certain death sentence. I've witnessed friends and some gay family members who experienced an agonizing and horrific death. I vividly recall the early days of this plague, waking in the morning and running to the mirror to see if KS lesions were present on my body, or if some other signature malady like fungal growth in my mouth was evidenced after a night of sweats. Many friends, family and former lovers have not survived this epidemic to have experienced the continued gift of life through medication regimens that keep many of us alive and well in today's world. I am so very, very thankful for being alive and having these medications to take. I recognize and understand the challenges, but I am alive!!! What an incredible homage to those we've loved, lost and love. I truly am grateful for these profound medications and I genuinely hope that someday a cure is discovered.

Comment by: Andrew (Cincinatti, Oh) Tue., Feb. 14, 2012 at 4:58 pm EST
It is a drag being tied to a pharmacy. Yes I wish they would find a sterilization cure for HIV. I take one pill a day. I take 9 Vitamins a day. Taking the pill doesn't bother me it's the stress that someday that pill won't be there that drives me crazy.

Comment by: G. Morgan (San Francisco, CA) Sat., Jan. 7, 2012 at 8:06 pm EST
The biggest obstacle to adhering to my medication schedule is dealing with the bureaucracy of both ADAP and MediCal (California's version of Medicare). Each year I have to document income, tax returns, bank statements, copies of life insurance policies, safety deposit boxes, cash on hand at home, title to my car, proof of residency, insurance information, etc. The frustrating part about this is that ADAP mandates I apply for MediCal every year even though my share of cost each year varies from $1800/month to $1900/month. In other words, after all that bureaucratic run around the benefit I get from MediCal is nothing. But, ADAP won't renew me unless I jump through the MediCal hoops every year. Two years ago I was so piss off by the futility of applying for MediCal that I let my ADAP lapse for 8 months. The idea of going through the MediCal gauntlet was so overwhelming; I decided to do without ADAP for the 8 months. Needless to say, my T-Cells dropped, my viral level went into the millions and my doctor was so concerned he changed my blood testing schedule from every three months to every 30 days. So, every month I watched HIV destroy my immune system and some how this seems preferable to dealing with MediCal. I finally got my act together and finished the application for MediCal (and got a $1980/moth share of cost) just prior to the following years ADAP being due again. So, that year I didn't have to go back to MediCal as I'd just been approved. What scares me for 2012 is that my ADAP expires in less than two months, my MediCal expired three months ago (I didn't renew it because ADAP was approved through the next year). But, now the whole useless process of applying for a benefit I don't need has to start again or ADAP will again cut me off. I've also read somewhere that in 2014 ADAP will be eliminated and State Medicare will take its place. Joy.

Comment by: Mia (Belgium, Europe) Fri., Dec. 2, 2011 at 5:22 am EST
I honestly just don't feel like it. I think about taking them and then I decide, with no real reason, not to take them... It's like it's a kind of rebellion against the virus. Almost like saying: leave me alone, you can't kill me, even without meds. Silly, irrational, stupid maybe, but it makes me feel stronger. I don't do this every day or every week even, only once in a while.

Comment by: brian (chicago) Thu., Dec. 1, 2011 at 4:56 pm EST
i would take them if i could get them..waiting for adap, called gillead, its been a month without and i need my atripla!!

Comment by: Tom Wiseman (Santa Ana, CA) Thu., Dec. 1, 2011 at 3:08 pm EST
I fear that when government gets involved in this catastrophic disease, this epidemic will get worse. By providing a short term relief effort thorough medication there is no behavioral changes that should be empathized. For instance, condom usage but that is not working. Now the gov't is giving away the relief of medication. So there will be a increase of AIDS/HIV infections. Look for it within 6 years.

Comment by: Tim (Gold Coast,CA) Mon., Nov. 28, 2011 at 11:09 pm EST
Just found this web site and it is a great place for those of us living with HIV.
Just reading the comments makes me realize I am not alone.
I have been HIV+ for 26 years now.
I have been on and off meds and my viral load and CD4 has gone up and down.
I now use a AM/PM pill box load it up once a week and use a 9/9 program.I medicate at 9 in the morning and 9 in the evening.
That works for me.I slip up and forget some times but when I look at the clock and see it is 9 it makes me think if I took my meds or not.
It has become a habit.
HIV is now treated like diabetes.You can live with it with lifestyle changes.

Comment by: Pinky love (Washington Dc) Sat., Nov. 26, 2011 at 3:11 pm EST
I want to take my med's and sometimes i really mean too but when i see the pill bottle I instantly get sick and depressed. Only been pos for 3yrs im only 21 it's just taken me time to cope!!

Comment by: yve (sa) Wed., Nov. 23, 2011 at 4:43 pm EST
i hate my meds i never take them, i wish i could but they trigger my anxiety i dont know what to do, living with hiv

Comment by: Ron (Sydney, Australia) Sun., Nov. 20, 2011 at 9:26 pm EST
My partner and I have been positive for 24 and 26 years respectively. We've both been on numberous different comb therapies and have weathered the many, many 'storms' of HIV treatment, including the nightmares, diarreah and wasting...until now. After all these years, my parnter has developed a gag-reflex when taking his meds to the point of dry-wreching and vomiting. Miraculously, he has mainatained no VL however this is hardly a sustainable situation if he cannot resolve. Your advise would be greatly appreciated.

Ron

Comment by: Robert T. (Lakewood, Ohio) Tue., Nov. 15, 2011 at 5:57 pm EST
I've had AIDS for 23 years and ben on meds for 22 of those years. For me, I go on-off, choose to not take a morning or evening dose, or just one of the many pills. After being only 80% adherent, I've just received my latest counts. They're exactly the same as when I was 100% adherent. I am NOT advocating pulsed therapy or NOT taking your meds. But I feel there must be some immune response left in my poor, tired body or my labs would be different. I suppose as every BODY is different, so would be each person's viral response to less than 100% adherence. Maybe a study or two would be good?!

Comment by: David (Palm Springs, CA) Sat., Nov. 12, 2011 at 5:42 pm EST
I take my meds every morning and evening as I have for the past 16 years. It gets easier to remember, it is part of life, like eating to stay alive. I have been HIV positive for 30 years and I never thought I would make it to the millenium so I am appreciative to have meds to keep me alive but they do have side effects, especially after you have been on them a long time and while I know it is important to keep a positive outlook, it does get tough. We must keep fighting for a cure.

Comment by: Mark (Scotland) Fri., Nov. 11, 2011 at 1:00 pm EST
I am now looking at alternative therapies, and I am coming off these damn medications. The search for a cure 31 years on...What a rip off...Big PHARMA Just keep you well enough if you keep popping those pills....Profit before people ££$$$$ welcome to hell. And there's the numerous side effects from those...I am trying something new.

Comment by: Liv Turner (Bronx) Wed., Nov. 9, 2011 at 1:02 pm EST
Aids in America is growing by the day. We tend to close our ears hoping it will go away or ignore that there is a problem. Until everybody takes this serious, things are not going to change. I had a family member that passed from Aids. So knowing first hand the effects that comes with this is hurtful, very. This will not go away until money is given to educate.

Comment by: Michael (Augusta, Maine) Fri., Nov. 4, 2011 at 9:12 am EDT
Feeling sick and tired of the perpetual pills, pills, pills. Tired of having HIV every single day forever. Fatigue and more fatigue no matter what. HIV is rotten.

Comment by: John J. (England UK) Fri., Nov. 4, 2011 at 8:02 am EDT
Very rarely, if invited to a friend's for dinner, I may forget because my schedule is different. I usually remember to take them, however.

Comment by: JR (Houston, TX) Thu., Nov. 3, 2011 at 5:50 pm EDT
I was infected two years ago. I came out in 1990 and saw so many die. It just kind of erks me when people complain about taking their meds. I am so greatfull to have them that I dont care if my hair falls out or my nails turn pink or I grow breast on my knee caps. It really doesnt matter. Meds are life. I thank God and remember those who didnt have this option ever single time I take them.

Comment by: jeane (zimbabwe) Thu., Nov. 3, 2011 at 3:22 am EDT
the shape of the pill is the biggest challenge for me. an elongated capsule shape pill is perferct as it goes down easily, even when i'm sleepy. however the large & circular ones are difficult to swalllow (you gag on it and taste the horrible pill taste) and make me dread pilltaking time.

besides that i have an alarm on my phone and carry 2extra pills when im going out and not sure of the time i'll be back home.

Comment by: Michael (Kentucky) Wed., Nov. 2, 2011 at 10:20 am EDT
I've been taking my Atripla since January 2009 every night at 11:00. I have the alarm set on my cell phone to go off at that time, and I have a weekly pill box to keep track that I'm on schedule. If I travel out of town, to a different time zone, I'll just take my pill one hour sooner or later to keep my 11:00 time consistent.

Comment by: Shawn W. (Salt Lake City, UT) Tue., Nov. 1, 2011 at 2:24 pm EDT
Alcoholism and drug addiction are barriers for some. I think part of the Harm Reduction movement should include helping addicts living with HIV/AIDS be consistent with their medications until they are ready to stop using.

Comment by: Mel (Orlando, Florida) Tue., Oct. 4, 2011 at 12:50 am EDT
I found that a AM/PM Pill box really helps me remember if I took my medications. I prepare it once a week. Then if I get busy and not sure if I took it a quick look at the pill box will tell me if i missed a dose or not. Takes about 10 minutes to prepare it for the week. Try it, it might help you too.

Comment by: ndungu (kenya) Tue., Sep. 13, 2011 at 3:27 am EDT
I concur with Turner about women being concerned about the changes in their body weight and shape. Collateral damage seems to take place in the long run (fat redistribution among women and loss of fat for men esp on the cheeks). However the good outweighs the bad and I believe that one can cope with the side effects in the long term. Skipping meds can lead to HIV mutating and also lead to resistance.
In our hustle and bustle of every day's activities one can easily forget to take his/her medicines. We need treatment buddies who can be of tremendous help and remind us to take the meds. They can also give us a good support system.
Alcohol/substance abuse can also make us not take the ARVs. Research has documented that most persons living with HIV also have alcohol/drugs related problems. One should be open to his/her HIV clinician in case one is struggling with addiction and counselling can take place. Uncontrolled alcohol intake will hasten the disease progression.

Comment by: Pete (Melbourne, Australia) Mon., Sep. 12, 2011 at 7:53 pm EDT
I'd like to give a voice to the other side of the story. I always read/hear about how difficult it is too adhere to the drug regime. So, I delayed starting meds for 6 months while i needlessly worried about if I was ready, how would i know i was ready, and from a lot of the articles, how huuuuuuuuge a life change this was about to be...

Well...I'm 1 year in too taking meds...and i just want to say its easy, easy, easy, easy!

No - I am NOT saying that it's easy for everyone...i initially turned red as a beetroot and was itchy for a week...and i accept there are real challanges for a lot of people...(least of which, Atripla is paid for by our Healthcare system in Australia) but if you are just a regular Joe/Jill going about your day to day life...Its so much easier then a lot of the adherance articles suggest...

Just my two cents/pennies worth...

Comment by: anna (middletown) Mon., Sep. 12, 2011 at 4:20 pm EDT
most of the time i take my meds right after dinner. the reason when i skip them is when i sit down & i doze off. i wake up next morning and then i remember half way thru the day. but i always take them except for those times. i usually know at the end of the month when i see how many pills are still in the bottles. this is an unforseeable event that is not anyones fault. i believe that there has not been any effect on me when i do miss them is because i usually always take them every day at the same time. so accidents happen but with prayer and gods grace i have been doing great.

Comment by: joyce Turner Keller (Baton Rouge, Louisiana) Mon., Sep. 12, 2011 at 11:22 am EDT
Many women are concerned about the changes in their body weight and shape;the excessive fat fat around the waist and abdomen. It is difficult to look at yourself in the mirror and see the obvious changes. We have to decide if we want to look good or feel good. I decided both. I take my meds, exercise, and eat healthy.

Add Your Comment:

(Please note: Your name and comment will be public, and may even show up in
Internet search results. Be careful when providing personal information! Before
adding your comment, please read TheBody.com's Comment Policy.)

Please do not modify the following input field.

Your Name:


Your Location:

(ex: San Francisco, CA)

Your Comment:

Characters remaining: